TIME Developmental Disorders

8-Year-Old Raises More Than $1 Million to Help Cure His Friend’s Rare Disease

Dylan Siegel and Jonah Pournazarian Michael Smiy

Every cent made from Dylan’s book goes to trying to find a cure for his friend's disease

Some best friends will do anything for each other – even if it means raising more than $1 million.

In 2012, when Dylan Siegel, then 6, found out his best pal, Jonah Pournazarian, had a rare liver disorder called glycogen storage disease type 1B, he decided to write a book to help raise money for a cure.

Dylan describes his friendship with Jonah as “awesome as a chocolate bar,” so he called the book Chocolate Bar and started selling copies for $20 each, according to ABC.

To date, nearly 25,000 copies have been sold in all 50 states and more than 60 countries worldwide.

Jonah, now 9, is one of just 500 children in the world with the disease, which has no cure. He fights dangerously low blood sugar and has to be fed cornstarch and water every few hours through a feeding tube in his stomach. It’s the only treatment for a disease that, left untreated, can cause hypoglycemia, seizures and even death.

Every cent made from Dylan’s book is going to Dr. David Weinstein’s Florida lab, the largest clinical research program for the disease in the world.

The money raised has financed the hiring of a new geneticist and studies resulting in new gene-therapy treatments, according to ABC.

It has also kept the facility open and on track to find a cure within several years.

“It is now reality. It’s not just a dream that these children can be cured,” Dr. Weinstein told ABC affiliate KGO-TV in February.

“I am so happy that we finally reached my million-dollar goal,” Dylan said in a statement. “And that kids around the world have been inspired by my story. I will continue to raise money until Jonah’s disease is cured forever.”

This article originally appeared on People.com

TIME Developmental Disorders

Why Screening Young Children for Language Delays Isn’t Helpful

language delay
Bruno Ehrs—Getty Images

Evidence to support language screening for all young children is weak

Doctors and new parents are eager to do everything they can to help young babies develop well. But the latest research shows that testing infants for signs of speech or language difficulties may not end up helping the young ones.

The U.S. Preventive Services Task Force, a government-appointed group of experts that reviews existing health and behavior data, analyzed the available studies on how effective screening for speech and language delays during infancy can be in improving children’s communication skills later. Most such screening is done by pediatricians during routine well-child visits and includes specific tests requiring parents to answer questions about their babies’ development, as well as the doctors’ own observations of the babies’ behavior and responses to verbal cues.

The task force reviewed 24 studies that looked at how accurate the most popular screening tools are. The trials involved children younger than five years old and revealed that the data is not strong enough to support using these studies as a reliable way to identify children who may have speech or language delays or who might have the early symptoms of language disorders.

The group came to a similar conclusion when it evaluated interventions designed to improve children’s development in speech and language areas. The studies showed inconsistent results and were of varying quality.

“There’s not enough evidence to say that these instruments should be used regularly,” says Dr. Alex Kemper, professor of pediatrics at Duke University and a member of the task force. “It could be that the instruments work well, and it could be that they don’t; we just don’t have enough evidence to say that all children ought to receive these tests at well-child visits routinely. We just don’t know whether or not they lead to benefit.”

In fact, the committee noted, the tests could contribute to harm, as the identification of potential problems could cause anxiety and result in time, effort and money spent by parents to address the problem. While an estimated 2.6% of children between ages three and five years received additional services for speech and language disabilities in 2007, the researchers say that many children who may be slower to develop speech or language skills eventually catch up and may not need specific services or interventions.

In his own practice, Kemper says that he employs the screening only when he or the parents of infants have concerns about a child’s language development. And that should be the guideline for other physicians and parents as well, he says—at least until stronger data can provide support for the idea of screening all infants, and for determining how to conduct the screening so that infants who need the most help can receive it.

TIME Developmental Disorders

ADHD Linked to the Air Pregnant Women Breathe

AR5037-001
Heavy traffic can pollute the air with compounds that can contribute to ADHD Alan Hicks—Getty Images

Everything an expectant mother does can have an impact on her baby’s development—including the air she breathes

Research has long connected what a mom-to-be eats and drinks to the health of her baby, and recent studies have even linked behavioral experiences such as stress, sleep and mood to the growing fetus’s development.

Now, scientists reporting in the journal PLOS ONE have pinpointed one exposure that could contribute to a baby’s higher risk of developing attention deficit hyperactivity disorders (ADHD), which the latest data from the Centers for Disease Control show affects around 11% of children aged four to 17 years.

MORE: Early Exposure to Air Pollution Tied to Higher Risk of Hyperactivity in Children

Frederica Perera, director of the center for environmental health sciences at the Mailman School of Public Health at Columbia University, and her colleagues focused in on how the pollutants in the air that pregnant women breathe can affect their babies’ cognitive development. Perera previously found a correlation between polycyclic aromatic hydrocarbons (PAHs) emitted by burning fossil fuels (such as in car exhaust and some forms of residential heating) to developmental delays by age three, reduced IQ in kindergartners and attentional problems by age six. So the team looked specifically at symptoms associated with concentration and evaluated how these effects connected to PAHs might be contributing to ADHD.

The scientists measured the level of PAHs in both the cord blood retrieved when the mothers gave birth and the mothers’ blood following delivery. They also collected urine samples from the children at age three or five years and analyzed them for PAH levels. The children born to mothers with higher levels of PAH during pregnancy had five-fold increased odds of showing symptoms of ADHD than those who were born to mothers with lower levels. The effect remained strong even after the researchers adjusted for the babies’ exposure to air pollution and smoking after birth.

“This is a new finding, and if the PAHs are identified as a contributor to ADHD, that opens up new avenues for preventing ADHD,” says Perera.

MORE: Study Links Exposure to Pollution with Lower IQ

PAHs, says Perera, circulate in the body for a long time, so even brief exposures could contribute to changes in the body. And each person processes the chemicals differently. Some may be more prone to breaking down the compounds into their potentially toxic elements, while others are less affected by the exposure.

While mothers may not be able to control some exposures, such as those from traffic and heating sources, there are some ways that expectant women can reduce their risk. Pushing local legislators to adopt clean air laws is one way to improve air quality, and on a more personal level, families can make sure that cooking areas have proper ventilation, avoid burning candles and incense and other sources of PAHs, and most importantly, ensure that they aren’t exposed to tobacco smoke. “Air quality is a policy problem, but individuals can be empowered to take steps,” Perera says.

MORE: Mom’s Exposure to Air Pollution Can Increase Kids’ Behavior Problems

Women who are pregnant can also eat more antioxidants from sources like fresh fruits and vegetables, since these can counteract some of the oxidative damage that PAHs wreak on fetal cells.

Perera stresses that limiting exposure to PAHs isn’t the only answer to reducing the increasing rate of ADHD in the country. Genetic and other environmental factors all contribute to the disorder, but identifying as many potential factors as possible could start to reduce the effect that the chemicals have not just on mothers, but on their developing babies as well.

TIME Developmental Disorders

Study: 96% of Deceased NFL Players’ Brains Had Degenerative Disease

The seal affixed to the front of the Department of Veterans Affairs building in Washington on June 21, 2013.
The seal affixed to the front of the Department of Veterans Affairs building in Washington on June 21, 2013. Charles Dharapak—AP

The brain bank's research furthers the argument that football is linked brain injury

The brains of 76 out of 79 (96%) of deceased NFL players showed signs of a degenerative brain disease, according to a study released Tuesday by the nation’s largest brain bank.

The Department of Veterans Affairs’ brain repository in Massachusetts, a collaboration between VA and Boston University’s CTE Center, found that the instance of chronic traumatic encephalopathy (CTE), a brain condition that causes dementia and other cognitive problems, was so high that it doubled the number of CTE cases previously reported by the institution, PBS reported.

“Obviously this high percentage of living individuals is not suffering from CTE,” Dr. Ann McKee, the brain bank’s director, told PBS. “Playing football, and the higher the level you play football and the longer you play football, the higher your risk.”

Doctors at the brain repository have previously conducted research on brain tissue samples from professional, semi-professional, college and high-school football players. The rate of CTE, while lower than 96%, still remained high, at 80%.

The studies were made possible by football players who volunteered their brains for scientific research, because CTE can only be diagnosed posthumously, according to PBS. As a result, doctors who conducted the study said their sample may be skewed, as many volunteers donated their brains because when they were alive, they already suspected that they suffered from CTE.

Still, the findings have added fuel to heated discussions that football—both at professional and lower levels—may be linked to degenerative brain diseases like Alzheimer’s, as a recent study showed. The NFL has also come under fire for allegedly covering up the risks of head injuries and concussions, which are linked to individuals who suffer from CTE.

TIME Developmental Disorders

How to Improve a Baby’s Language Skills Before They Start to Talk

Researchers say playing a series of sounds when infants are four months old could speed up the way babies process language and make them linguistic stars when they’re older. How babies respond to the sounds can also predict which infants will have trouble with language as well

The first few months of a baby’s life come with a flurry of challenges on a still-developing brain. Sights, sounds, smells and touches as well as other emotional experiences flood in, waiting to be processed and filed away as the foundation for everything from language to emotions and how to socialize with others. What happens if things are not finding their right place in the brain during these critical months? Some research suggests it results in developmental delays later on—and that’s just what neuroscientist April Benasich and her colleagues from Rutgers University found in a new study, published in the Journal of Neuroscience.

Previous studies done by both Benasich and others show that the brains of children who learn to speak later or who develop reading disorders like dyslexia showed differences in detecting small differences in speech, such as the difference between da and ba, when they were infants. Other research has come to similar conclusions.

Genetic factors certainly play a role, but up to 10% of the babies Benasich has studied had no family history of developmental problems, yet still showed language trouble when they started talking. That’s why she turned to studying the brain maps of healthy babies before they learned to speak. These routes show how infants detect and respond to sounds in their environment—from words spoken to them to the humming of a dishwasher. In these early months, their brains are primed to sort out this cacophony of auditory stimuli and start making more refined distinctions between them. Doing so requires distinguishing between tiny differences, both in the sounds themselves as well as in frequencies. “Babies do this naturally; this is their job, since they want to be able to pick sounds out quickly and figure out whether they need to pay attention to them,” says Benasich.

For the babies in this study, she adorned them with skull caps studded with electronic sensors that would draw a map of their EEGs as they were presented with different, non-linguistic tones. Some of the babies were played sounds that changed ever so slightly, such as in their tone or frequency, and whenever there was a change, a small video in the corner of a screen they were looking at popped up. The babies naturally turned to watch the video, so the scientists used these eye turns as a signal that the babies had heard and recognized the transition in sounds, and were expecting to see the video. Another group of babies were played the same sounds but without the video training, and a control group didn’t hear the sounds at all.

MORE: Want to Learn a Language? Don’t Try So Hard

It wasn’t the sounds themselves that were important, but the changes in them that were key to priming the babies’ brains. Those who were trained to pay attention to the changes in the sounds, for example, showed more robust mapping of language sounds later on when they started to babble; by 18 months, these infants showed brain mapping patterns similar to those in two year olds. They were faster at discriminating different sounds, and quicker to pay attention to even tiny differences in inflection or frequency compared to babies who weren’t given the sounds. The babies who only listened to the sounds without the training fell somewhere between these two groups when it came to their language mapping networks.

Benasich says that the training lays the foundation in babies’ brains to become more efficient in processing language sounds, including very tiny variations among them. Their brains are setting up different neural routes for each sound, like a well-organized airport with separate runways designated for northbound and southbound flights. Other babies were less adept at this, essentially routing every sound through the same neural network, akin to sending every plane off the same runway, leading to delays as some have to bank and redirect in the opposite direction. In similar ways, says Benasich, in language, this cruder processing of sounds could result in delays in reading or speaking or language acquisition, and toddlers end up having to “manually” process the sounds in a more tedious and less automatic process. “Instead of automatically discriminating sounds without pausing, they have to stop and think and what that sound might be, and that leads them to hesitate a little,” she says. “That small hesitation makes a huge difference in how well they learn and process language.”

The training, she says, was minimal – the babies’ parents brought them in for six to eight minute sessions once a week for about six weeks. Yet she was “surprised by how robust the effects are for the babies.”

The study involved healthy babies who did not have risk factors for language disorders, so the training only helped them to enhance their later language learning. But the team is currently studying a group of babies at higher risk of having language deficits, either because of genetic risk factors or by having siblings affected by such disorders. If these babies show different brain patterns compared to those not at risk, then it’s possible that EEG patterns in response to sounds could predict which infants are at risk of developing language problems even before they start to talk.

Benasich is also working on developing her test into a parent-friendly toy that parents can buy and use with their babies; if their babies are developing normally, then the training can only accelerate and enhance their language skills later on, while for those who are struggling, the training could help them to avoid learning disabilities when they start school. It’s not possible to screen every baby, but if parents and doctors are able to take advantage of such a tool, then she hopes that more language-based disorders might be avoided. “Babies naturally do this, but for those who are having trouble, we are guiding them to pay more attention to things that are important in their environment, such as language-based sounds,“ she says. “We think we could make a huge difference in the number of kids who end up with learning problems.”

TIME Developmental Disorders

How Brain Waves May Be the Clue to Diagnosing Autism

Unique EEG fingerprints reveal how autistic brains process sights and sounds

Diagnosing autism as early as possible, even before the first noticeable symptoms of social and developmental delays emerge, is becoming a critical strategy for reducing the condition’s most severe symptoms. Experts have long known that children with autism process sensory information – sights and sounds in particular – in different ways than unaffected children.

In a new study published in the Journal of Autism and Developmental Disorders, Sophie Molholm, from the departments of pediatric and neuroscience at Albert Einstein College of Medicine, proposes that those differences may lay the foundation for social and communication deficits in some children later on.

Molholm and her team took electroencephalogram (EEG) readings from more than 40 children aged six years to 17 years diagnosed with autism and compared their patterns to those of unaffected children of similar age and other characteristics. All children were given either a flash cue, a beep cue or a combination of both, and asked to press a button when these stimuli occurred. A cap with 70 sensors picked up the children’s brain responses every two milliseconds during these tasks, including those that recorded how the brain first processed the sensory information.

MORE: Behavior Therapy Normalizes Brains of Autistic Children

The children with autism showed a distinctly different brain wave signature from those without the condition. Specifically, the signals in those with autism showed differences in the speed in which the sights or sounds were processed, and in how the sensory neurons recruited neighbors in more far-flung areas of the brain to register and make sense of the information. And the more abnormal this multi-processing was, the more severe the child’s autistic symptoms. “By developing this tool in the older cohort of children we can then figure out which ones are the most promising and then go test them in younger children,” says Molholm.

It’s also possible that because the children she studied were older, the differences in their EEG patterns were the result of autism, rather than a sign of changes that precede the disorder. But, she says, “If you ask me to make an educated guess, I would say these are part of autism, and they represent neuropathology related to having the disorder. It seems unlikely to me that you get autism and then develop atypical auditory processing.”

MORE: Autism Symptoms Disappeared With Behavioral Therapy In Babies

Molholm says the sample was too small to use the profile for diagnosing autism, but it could lead to such a test if the results are confirmed and repeated. To confirm the findings, scientists will have to intervene with behavioral strategies for helping the different regions of the brain work in a more coordinated way when confronted with visual and auditory cues. If that reduces autism symptoms, then EEG profiling could become one of a number of new ways that doctors can start identifying those at highest risk – however young — of developing autism.

TIME Developmental Disorders

3 in 10 Former NFL Players Will Get Alzheimer’s, Dementia

Percy Harvin
Seattle Seahawks wide receiver Percy Harvin (11) reacts after taking a big hit during an NFL Divisional Playoff game against the New Orleans Saints on Jan. 11, 2014. Kevin Terrell—AP

That's at least twice the rate at which the general population experiences the same diseases

Nearly 30 percent of former NFL players will develop brain conditions like Alzheimer’s or a less debilitating form of dementia, according to a report released Friday by the NFL and the NFL Players’ Association.

The data in the report was used to calculate the size of a $675 million pool that will be provided to former NFL players who suffer from brain problems as a consequence of their time as professional athletes. The information was provided to the federal judge overseeing a lawsuit against the NFL on behalf of former players.

The report said that the rate of brain conditions for former players were “materially higher than those expected in the general population” and diagnosis occurred at an earlier age, according to an Associated Press report.

The terms of the settlement provide $675 million for treatment of former players, $75 million for neurological testing and $10 million for research. The judge overseeing the case expressed concern that the funds might not be sufficient to cover the estimated 6,000 former players who may suffer from brain disorders.

[AP]

TIME Developmental Disorders

Autism Symptoms Disappeared With Behavioral Therapy In Babies

Baby on fur rug
Getty Images

Parents using ground-breaking new techniques with infants essentially cured their babies of developmental delays

For the first time, researchers report that treating early signs of autism in infants as young as 6 months can essentially help them to avoid developmental delays typical of the disorder. And the intervention doesn’t involve pills or invasive surgery but an intensive behavioral therapy provided by the babies’ parents, according to the Journal of Autism and Developmental Disorders.

Kristin Hinson was one of those parents. She knew what autism looked like. With two of her three children showing developmental delays, she was on the lookout for similar signals when her son Noah was born. And at 6 months, they came. Noah began avoiding eye contact with her and other family members, his muscle tone was low, and he started lagging in the early infant milestones like rolling over and responding to sounds and people. “He was doing everything, but everything was a little sloppy,” says Hinson.

Because she had two children affected by autism, Noah was enrolled in a study of infant siblings of autistic children at the University of California Davis. Noah’s symptoms appeared relatively early — at that age, doctors can’t diagnose the developmental disorder, but they know the hallmarks that are strongly associated with it. Noah’s sibling history also meant there was a good chance he would eventually show delays in language and social skills as well.

MORE: Brain Imaging Could Detect Autism Risk in Infants as Young as 6 Months

He was fortunate enough, however, to be one of seven children to begin an intensive, parent-based program for treating autism in infants as young as 6 months. The goal of the program is to slow or avoid the symptoms of autism that often mean affected children need special education or other formal care as they get older.

Hinson attended 12 sessions for an hour once a week at the Institute, and continued to apply what she had learned there during each of her interactions with Noah at home for six weeks while following up with their counselor. The techniques she and the other parents learned were based on the Early Start Denver Model, which was developed by Sally Rogers, a professor of psychiatry at UC Davis, and Dr. Geraldine Dawson at Duke University.

The program involved intensive and intentional play by trained therapists at children’s homes. Once a week, the therapists went to the families’ homes and purposefully engaged with the toddlers, who were between three years and five years old. Even when they were rebuffed, the therapists would persist, finding objects that appealed to the children and inserting themselves into the child’s play with that object so they were forced to have more social engagement. Eventually, the children responded, and even showed brain changes that suggested their brain patterns were normalizing to look more like those of children unaffected by autism.

With the latest group, Rogers moved the program earlier, to babies between 6 months and 15 months old, well before autism is usually diagnosed. Because the babies were so young, Rogers wanted to test whether parents could be taught the same techniques that therapists used, so the strategy could be applied more consistently and frequently than a few times a week, and during daily interactions with the infants—while they were fed, diapered, bathed and more.

MORE: Study: Siblings of Autistic Kids Show Similar Brain Activity

The results were astounding. Six of the seven infants in the study essentially caught up in their learning and language skills by age two or three. They no longer showed developmental delays in social communication or language, and behaved just as a control group of children unaffected by the disorder.

“At 18 months, Noah just blossomed,” says Hinson. “He started talking, and really socializing. Before, he wasn’t really engaging with others, and all of a sudden it felt like a light flipped on.”

Noah is attending a mainstream preschool, and Hinson doesn’t anticipate he will need any special education or tutoring to keep up with his classmates once he enters kindergarten,

Doctors, especially psychiatrists, don’t like to use the word “cure.” But, says Rogers of the small, promising group of infants like Noah who were part of the study, “We are curing their developmental delays.”

MORE: Behavior Therapy Normalizes Brains of Autistic Children

She’s careful not to suggest that the behavioral therapy can cure children of autism, since the only a handful of babies were involved, and they haven’t been studied long-term yet. But the findings do support the idea that intervening early, and with intensive therapy, can make a difference in the trajectory of the disorder.

The results also suggest that the progression of autism isn’t inevitable, and that its symptoms aren’t entirely biologically or genetically preordained. “If a baby doesn’t smile at you, doesn’t make eye contact, doesn’t respond pleasurably to your many interactions or doesn’t ever call for your attention, you don’t know if you’re on the right track,” she says of the typical early signs of autism. “If the message you get from them is that they aren’t interested, then you’re not going to continue.” Over, time, she says, that limits the number of social learning opportunities that the babies have, and they may spiral deeper and deeper into their own world. “Over time, the parents and children accommodate the child’s interest in objects and lack of interest in people.”

The behavioral training that she provides parents counters this cycle, and forces parents to find ways to engage their child, even if it means using the inanimate objects that appeal to them. If an infant is captivated by a stuffed animal, for example, then parents are trained to enter their baby’s field of vision, and play with the animal by using it to tickle the child, or tickle himself. The parent might even hide the stuffed toy under her shirt, and encourage the baby to find it. “The parent takes over so the child is now interested in the parent because there is a game going on with the toy and the parent,” says Rogers. “The key is to create a social game so the object is now serving the people instead of taking over the child’s attention.”

That shift takes effort, however, and it isn’t easy. “The first month I felt really frustrated,” admits Hinson. “There was a lot of pressure on me.” She says that it took most of the 12 week program before she felt completely comfortable with the new way of interacting with Noah, with inserting herself into his “circle” of attention at every opportunity, and with waiting for him to respond to her forays at communication.

But, she says, it was well worth the effort, and it comes easily. “Every new skill, like teaching him nursery rhymes and songs, or trying to get him to share something, and show me something, didn’t come natural to me at first. But when he started giving me some reciprocation, like smiling and babbling, it was like I was getting rewarded for the hard work.”

The skills are “completely doable,” says Hinson, and far less intrusive than having therapists visit the home once a week, which she did for her two older children who were developmentally delayed. “It’s brilliant if you can get the hands-on training. Because as parents, we are in their circle all the time, every day of their lives, and what better way to help them than to do it every day at every opportunity.”

While she’ll never know if the program was actually responsible for helping Noah to avoid developmental delays, Hinson is sure of one thing. “If they could have had something like this for my other children, I think they would be completely different children today.”

 

TIME Developmental Disorders

ALS Ice Bucket Challenge Raises $8.6 Million in a Single Day

'Unprecedented financial support will enable us to think outside the box'

The ALS Association received $8.6 million in donations Tuesday as proceeds from the ice bucket challenge continued to pour in at record rates.

The association has begun posting daily tallies from the fundraiser on its website, stating on Wednesday that since July 29 it had raised $31.5 million. That’s an $8.6 million jump over the previous day’s tally, and more than 16 times the amount it had received over the same period last year.

“Increased awareness and unprecedented financial support will enable us to think outside the box,” the ALS Association said in a statement. Celebrities, athletes and politicians ranging from the Foo Fighters’ Dave Grohl to former President George W. Bush have taken the challenge, pouring buckets of ice water over their heads to raise ALS awareness.

The group added that it would use the donations to scale up research into the disease, including a recent pledge of $3.5 million to fund 21 new research projects, and provide more services to people currently suffering from ALS, also known as Lou Gehrig’s disease.

TIME Developmental Disorders

Kids With a Parent In Jail Need Special Care, Research Says

Boy presses his nose against window
Lynn Koenig—Flickr RF/Getty Images

It's a greater influence than the death of a parent or having divorced parents

Having a parent in jail is associated with more behavioral problems and learning disabilities in kids compared to children of divorced parents or a parent who has died, according to a new study.

“Children of incarcerated parents, compared with their counterparts, are a vulnerable population who are disadvantaged across an array of health outcomes,” the authors write. “The correlation between parental incarceration and children’s health means that physicians serving poor and minority communities may consider screening children for parental incarceration and that social workers in these communities should pay special attention to children’s health.”

The study, published in the Journal of Health and Social Behavior, used data from the 2011-2012 National Survey of Children’s Health and compared kids with similar socioeconomic, demographic and behavioral characteristics. The results showed that kids with a parent in prison were associated with a greater likelihood for ADD or ADHD, behavioral problems, speech and language problems, learning disabilities and developmental delays.

Among black children with fathers without a high school diploma, the data showed 50% experienced a parent in jail by the time they were 14 years old compared to only 7% of white children. The rate of developmental and behavioral disorders in kids was higher in those whose parent went to jail versus kids who experienced a parent death or divorce.

Since the incarceration rate in the U.S. continues to increase—researchers estimate that 2.6 million kids have a parent in the jail at any given time—the study authors believe it’s important to remember that having a parent in jail has a serious impact on the people they leave behind.

 

 

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